Saturday, October 10, 2009

First Dose of Treatment

We received a few warnings from our doctor on Friday.

1. There will not be an Oncologist on duty this weekend that will know anything or understand ROHHAD - so if you have questions email him or wait for Dr. Chen on Monday

2. Haven will be grumpy and irritable

3. Haven will be extremely hungry!


Well yesterday when we signed in to Haven's room it was pretty funny. She is in the same isolation room she was in this Summer. It almost felt like home. This was her earlier in the day. She was playing PS2 and having a blast.

This was right after her 1st dose. She received her antacid right before starting. She was extremely sick within 5 minutes of starting the treatment. The nurse gave her some anti-nausea medication. But it just wiped her out.

I received a text around midnight that Kris was asleep and Haven called the nurses station and asked them to send her nurse in because she needed a hug and she was feeling lonely. The nurse came in and when Kris woke up she was sitting on her bed hugging her. He didn't know what was going on. She hung out with her nurse - who is the same night nurse she had before - talking about Disney and the Make-A-Wish people coming to visit her.

Today at the hospital I snuggled in to Haven's bed with her and took a very nice nap while tickeling her littles (hair). It was so relaxing and quiet. But I can't wait to get her back home.

thank you to everyone for praying and thinking of our baby.


  1. Haven we are keeping you in our prayers, you are such a brave, strong girl.
    Big hugs

  2. Dear Princess Haven: I look several times a day at your website to look at your photos and read about how you are doing. You are a very special little girl to many, many people including me! You truly are a beautiful princess! Your friend, Marilyn, in Florida.

  3. Dear Misty,

    Praying that the side effects won't be as bad for Haven as the doctors think and that she'll get to go home very soon. Please tell her that I'm sending her a BIG HELLO!

    With caring prayers,